The Memorial Service for Jon is set as follows:

Saturday, December 5, 2015 at St John United Church of Christ, 950 Webster St, Defiance, OH 43512.
Visiting with family will be from 11:30 am - 1:00 pm with the Service starting at 1:00.

If you can not make it, please leave a memory on his blog. If you have "paid it forward", feel free to leave your story on the blog as well. To view peoples comments, please click on "Comment" at the the end of post. It will not show on the page itself.

The family thanks you for your friendship with Jon. Your thoughts, prayers and comments have meant a lot to us. Family and friends alike miss him very much.

Here is the obituary we posted in the Defiance Crescent-News Sunday November 22, 2015.

Jon P. Castanien, 50, of Defiance passed away Thursday. November 19, 2015. He was born July 9, 1965 to William J Castanien and Marjorie (Slawson) Castanien In Mansfield, OH. He  moved to Defiance in the fourth grade. Jon spent most of his working career at Silgan and Campbells.

Jon enjoyed helping his friends with roofing, drywalling and plumbing with the idea he would build his own home. Carpentry runs in his dad’s side of the family. He had a love of nature and especially enjoyed hiking at Hocking Hills, camping, canoeing, fishing with friends at Independence Dam, shooting pool, bowling, playing with his dog, Bo. Jon taught himself to play the guitar and loved sing-a-longs. 

Always a Harley fan he finally bought one and spent many hours enjoying the freedom of the road. Unfortunately he spun out on a stony curve in October 2008 and cracked or crushed many vertebrae including the C6 which left him a partial quadriplegic. He spent 14 months in various nursing facilities in the Columbus area before being well enough to return to the Defiance-Waterville area in 2010.

Never having married and had a family of his own Jon enjoyed watching his niece, Angelique (Jeff) Bailey, and nephews, Joe (Jenny) Bohn, and Josh Bohn grow and start families of their own; Liam, Aria and Rayla Bohn and Kendall Bailey.

He will be sadly missed by his parents and siblings; Carol Castanien-Bohn (David Peebles), Napoleon; Barbara Castanien, Gahanna; Greg Castanien (Doris Newman) Defiance; and brother-in law, Marty Bohn, Defiance. He was loved by numerous aunts, uncles and cousins. He especially got a kick out of the family get togethers on both sides of the family.

Jon was preceded in death by his grandparents, Paul and Ruth Castanien of Marion, OH and Sam and Kathleen Slawson of St. Clair Shores, MI; and his sister, Jo Marie Castanien.

Even a wheelchair could not keep Jon from reaching out to fellow patients and others. In line with the Slawson grandparents’ tradition we would ask that you “pay forward” a good deed in his memory in lieu of flowers or cards. If you’d like to share your experience the family would love to hear of them.

Following in the footprints of those same grandparents, Jon donated his body to the University of Toledo medical studies. It is hoped the students will learn much about how the body copes with injuries such as he sustained. 

Plans for a memorial service have not been finalized. Please check Jon’s blog for final details: http://jonpc.blogspot.com. Condolences and favorite memories can be left there also.

Here are 10 super easy acts of kindness you can do to continue to spread the love and make the world a kinder place:

1. Thank someone who's supported you in the past, like a teacher, friend, or mentor, by giving them a hand-written letter.

2.  Spend a couple hours volunteering at a local nonprofit organization.

3. Donate goods to a local shelter.

4. Buy lemonade at a child's lemonade stand.

5. Call a friend and tell them how much they mean to you.

6. Send kind words to someone getting a lot of hate on social media.

7. Send groceries to a friend who is busy and/or going through a difficult time.

8. Put a quarter in an expired parking meter to help a stranger avoid getting a ticket.

9. Send flowers anonymously to a receptionist or security guard. 

10. Leave an encouraging note somewhere on a store shelf or in a popular library book.

We are adding a few other ideas we found on other sites: 

When going through the take out line pay for the person’s order behind you.

Give a smile to someone who seems on the “grumpy” side.

Write a letter to a child who could use some extra attention.

Offer to pick up groceries for an elderly neighbor, especially in extreme weather.

Each time you get a new item of clothing donate something old.

Out of the blue, send flowers to a friend.

The last few months

We haven't posted in quite a while. Jon passed on the 19th so we thought we'd give you a quick run down of his last few months:

Around the first of March Jon developed yet another bout of pneumonia in his right lung. Twin Rivers started him on a round of antibiotic but on the third or fourth day he became significantly worse. They called an ambulance to take him over to Defiance Regional and sometime between the time the EMTs got there and the delivery across the street his heart stopped and they administered CPR and intubated him for a breathing problem they saw developing.

Defiance Regional ran some tests and thought they saw something near his heart so made arrangements with Toledo Hospital’s cardiology department. He was life-flighted to the hospital. They ran more tests and by the time we got there they had ruled out heart problems and were concentrating on his pneumonia. 

Within days, his right lung was full and the left lung started filling up. In order to help him breathe he had another tracheotomy...which meant he couldn’t talk. He really hates having to repeat things over and over but none of us have gotten very good at lip reading. 

Days spread into weeks and the weeks went to a month before he could be taken out of the ICU. He needed to be weened off the respirator, something neither nursing home in Waterville or Defiance could do so he was taken to Advanced Specialty in Toledo. It was there that we learned Jon had developed ESBL, a condition where the antibiotic becomes ineffective. He has only a few antibiotics available for both pneumonias and urinary tract infections.

It took another month to get to the point where he could come back to Twin Rivers. He still could not get out of bed because his bed sores were so bad. By the time his sores would tolerate being in a chair for an hour he was too depressed to try. Toledo Hospital had put him back on tube feedings and he lost all interest in going back to regular food.

He was feeling fairly well toward the end of June and on the 4th of July he went outside to watch the fireworks. His birthday came on the 9th and he had developed another case of pneumonia. Thankfully, that did not develop into a serious condition but it did prevent him from coming to the house for a birthday celebration. He wasn’t even allowed out of his room for fear something would happen that required immediate attention. 

August and September came with beautiful weather and we tried to get him to agree to riding in the van to go to Independence Dam. He wouldn’t even go sit outside much less take a short trip! 

Late September or early October Jon began talking about wanting to die. It was with a heavy heart we finally agreed to have hospice evaluate him to see if he could be admitted to their program. They could see where the pneumonias and UTIs were not only coming in more rapid progression but were significantly worse so he was admitted to the program.

He was taken off many medications, including the blood thinner for his clots. He had clots backed all the way up his legs and the filter which had been installed several years earlier had become clogged.

When he had his first serious bout with low oxygen in his blood on Nov. 3rd we thought perhaps a blood clot had worked its way around the filter and lodged in his lungs. He was running a fever and the nurses were sure he would not make it through the next 24 hours. I scurried around and got all his paperwork sent in for donating his body to the U of Toledo’s body donation program. Then Carol noticed that Jon’s eyes were open a bit and started talking to him. It wasn’t too long before he was making a recovery which astonished the nurses and us! Soon he was asking about her birthday party and what we were going to eat. He actually intended to eat something with us. We were amazed because earlier he had refused to even come to her party even if we had it at Twin Rivers. He did get dressed, came to the dining room, ate 5 or 6 small bites of KFC chicken and carried on conversations with us. He even was up in his chair visiting people the next few days.

We got past her birthday on the 7th but he had another oxygen level problem on the 13th. Again his nails turned blue and his readings were in the 40s and 50 percent range and again had a fever. He even had some of the mottling of the skin that indicates body functions were shutting down. His breathing became very rough and his sleep apnea was quite obvious. He would take 9 quick breaths and then wait 6-7 seconds before taking his next breath. He did come out of that but it was at this point that Carol had decided that she wasn’t going to leave his side. She ate and slept at the facility. He was a little better but on the “loopy” side. He asked Angelique one day “to comb his arm.” We think that was a combination of blood oxygen deprivation and a reaction to the hourly doses of morphine he was getting.  

Wednesday, the 18th, his blood oxygen fell into the 40s again, his breathing looked like what I describe “as a baby elephant kicking him in the ribs.” His nailbeds were blue again and the undersides of the tips of his fingers were quite dark. A breathing treatment seemed to pull him out of it and his oxygen readings were back in the 90s where they should have been. He had a relatively decent night’s sleep.

The next day the aide from hospice came and gave Jon a bath and shaved him. Shortly afterward he had trouble breathing again and that was when he passed on, around 11:15 a.m.

Success!

Jon had his gall bladder surgery today and we are pleased that everything went so well! The surgeon was able to do it laproscopically (sp?) but had to leave a small portion behind that was hiding behind an artery. The surgeon said he must have had a problem with his gall bladder for some time as it was quite enlarged.

We were hesitant about a general anesthetic but the docs were very positive about it and foresaw no problems and we are thankful that they were right. After surgery he was sent to ICU where he could be closely monitored in case something went wrong….especially important since he can't feel anything below the mid-chest line. 

Jon was a changed man in ICU! His eyes were bright again, he appreciated jokes and he wanted to celebrate with a steak dinner from Applebees. We had to explain to him how he would have to be careful of his fat intake for a while and especially the first two weeks after surgery so he was convinced it would be better to wait a while to celebrate. 

He will be in ICU (Intensive Care Unit) overnight and into the day tomorrow. Not too sure how long he will stay in the hospital but it is comforting to see that they are taking extra measures to be sure he is okay. Thanks for all your prayers and concerns.

Not better but not worse either

Had a chance to talk with Jon's surgeon today. The CT scan today showed that the pancreas is no worse but is not any better either. His vital signs, however, are all stable so that's good. If he remains stable and the pancreas "cools down" she would like to operate on Friday and will keep him in the hospital until then. The one big indicator of problems with the pancreas is pain--extreme pain-- and since he can't feel pain it would be difficult to know if and when the pancreas could flare up so there is hesitation about sending him back to Waterville until after surgery. Another reason for removing the gall bladder is because the gall bladder could again produce stones and irritate the pancreas. It is interesting that the gall stones in this case are more like gritty sand than what we think of when we hear "stones." 

There are some other factors that present problems for the surgeon. She would like to use the smallest incision possible. The feeding tube going into his stomach may block the view which would mean a full incision. Being a spinal cord injury patient ups the risk factor as does the fact that he already has so many blood clots. 

We discussed anesthesia somewhat and the need for general anesthesia. We asked about a spinal block which she thought was a possibility but Jon wants to be completely unaware of what is going on. The pulmonologist at Heartland says that if Jon has a trach put in during surgery she won't recommend ever taking it out which adds another infection risk down the road. The talk about a spinal block also led to a discussion on having a neurologist do a pre-op assessment to determine pain levels so we need to double check the location of the break in his spine.

In the meantime, they have put him on liquids which includes jello and his tube feedings are being restarted. The colon seems to be operating normally. If I have not already mentioned it in a previous post he does not have a mega-colon which is a relief.

One of the gals that used to work at Heartland is now connected with St. Luke's and she popped in for a few minutes while we were there. It sounded like she might stop by again after work. It's good that he can see a familiar face once in a while. We are due for still another bout with snow starting tomorrow afternoon so it may be toward the end of the week before we get back up there.

The hospital's address is:
St. Luke’s Hospital

5901 Monclova Rd., Maumee, OH, 43537-1899

Jon is in room 378 Phone number for the hospital is 419 897 9386. He can't answer the phone in his room.

That's it for now…keep up the prayers and thanks for tuning in.

Gall Stones!

The CT scan of the pancreas also showed the gall bladder and stones were found. The gall bladder is irritating the pancreas. The two enzyme levels go down after the initial flare up so I guess pancreatis is the diagnosis. There will be another scan tomorrow and then I gather they will decide how they are going to tackle things. It's a good thing he can't feel things like hunger since he hasn't had anything to eat in about 9 days. His nurses at Heartland were concerned about how much weight he's gained this year…at least 35 lbs…he'll be a lot lighter when this is over! Dave, Carol and I were thinking of going to see him but the roads are still not the greatest, Dave's hips are bothering him and my right knee is absolutely killing me. I couldn't possibly hike around  to get to his room! Will keep you posted as things come along.

Update

Jon's nurse practitioner was dismayed that he couldn't be scheduled for an appointment before Monday so she sent him to the E.R. at St Luke's. They admitted him last night. They are thinking pancreatis but Jon doesn't have the really high amylase and lipase levels that usually go along with that condition. (Aunt Eleanor will understand those levels…) Will keep you posted.

Complications have set in

Just a note to update you on Jon’s present condition. It started harmlessly enough with a cold and urinary tract infection combined. It has spiraled into a colon blockage and edema in his hands, feet and ankles. His poor tummy looks like he was expecting quadruplets anytime!

His blood tests results are all over the place. Many results are in the too high or too low zones. Test are being scheduled as we speak for a CT scan of the abdomen (abdominal series) and a doplar of the left arm which is cold as ice in addition to being swollen.

There is talk of his having developed a mega-colon which would require one of several things: either the removal of the enlarged section or having a colostomy. One of the nurses pulled out quite a bit of bile  and some air. Presently he is connected to some apparatus which operates on zero gravity to pull air and liquid out of his belly.

Due to the increased size of his belly he is not breathing properly and has been put back on oxygen at a level 4 (4 liters an hour???)

Needless to say his spirits are dampened considerably. One look at him and you know its just not Jon! His appetite has disappeared which may be fortunate since he’s not allowed to eat...and hasn’t been for almost a week.

We will be meeting with the respiratory specialist on Monday. He has all the staff quite concerned and puzzled. Anyone with a connection with the good Lord should feel free to dial him up now!

Will keep you informed as things unfold.

Catching Up

Sorry we have not posted for such a loooong time. That's because in general Jon has been doing relatively well. He has changed rooms to room 404. He went from having a roommate to having a room to himself and is now back to having a roommate again. He really enjoys having a room to himself. But now he has two tvs going at the same time. For Christmas Mom made him a quilt using the fronts/backs of 6 of his Harley shirts with some of his old jeans. I made him a pillow out of the front and back of a Harley shirt from Traverse City. His room looks more like home rather than a nursing home. To add the finishing touches, he has put up 3 pictures from his favorite artist, Albert Mukasa Wilson. He would really enjoy some company. He misses seeing everyone. Carol keeps him up to date with what she knows. But he would really like to hear it directly from his friends instead. The family was up to visit with Jon on Easter. Joey has gone up to see him with Liam a few times. Liam seems to be getting comfortable with Jon. Mom and Carol go up at least once a week, usually on Tuesdays.

A Visit from Liam

Wednesday Carol and I went to see Jon. Since she was babysitting his nephew Joe's son, Liam, we took him along. We had a good visit. Jon thought he recognized my car pulling in the drive when he was coming out of physical theapy so he was waiting for us in the lobby. We went into the activity room where the finches and doves are and Jon pulled into his usual laying back position. I couldn't resist temptation. Liam has learned to balance himself in a sitting position so I scooped him up and put him on Jon's lap. They had a good time checking each other out.

Jon says he's back to working with weights in therapy. I took his electric toothbrush so maybe he can add that to his occupational therapy sessions for a few days when he gets the hang of it back. Jon continues to look good. Have heard no complaints so far--of course my hearing hasn't been so good these last few months so maybe I've just missd them.

Miscellaneous Thoughts

A call from Mother reminded me that I haven't updated for a while. Carol and I visited Jon yesterday and are pleased to report that he looks great. He is eating pretty much by himself after he gets the appropriate silverware in his hand, is sitting in his wheelchair and looking comfy, is going back to bed early in the evening as recommended without a squawk and in general doing very well. He's back to going to therapy. The chair will be having new pressure mapping in the near future. Something finally triggered his memory as to where his disability checks have been going so we've got that all squared away also.

There was a car show next door last week-end and Jon was all set to check it out when someone checked the thermometer and their weather policy and deemed it too hot for the group to go outside. Can't help but think how that might have prevented some of the problems of last summer!

Speaking of being hot, does anyone know how to find past temperatures for the month of July for this year? It looks like we are slated for another week of 90+ temps and it seems like we've had a run on them all month. Hope all of you are coping well.

Catching up

I knew I had become lax again but didn't realize how much! My apologies. Jon has been feeling pretty well this last week. For one thing, he was accepted by Heartland of Waterville and was moved there after dinner Wednesday evening.

It is barely inside the south limits of Waterville at the end of a small road which also is home to a Masonic Village. The rooms are small and he has an elderly gentleman for a room mate. Carol and I had visited on Thursday and were there at supper time. He didn't think he was going to get real food until Friday but what he was given was mostly soft food; bread with gravy and small chunks of chicken, mashed potatoes and gravy, cooked carrots, pea pods etc. and after several tastes I declared it to be a strawberry crisp. He ate most of the bread and gravy, only a few bites of potatoes--it seemed awfully salty!- most of the veggies, his milk but turned down the dessert.

Carol and I had visited on Tuesday at Liberty and when I left I checked his Foley bag to see how everything was going. I was amazed to see chunks of stuff in the tube. I took a picture so I could show Jon and as I was leaving I showed one of the staff. She immediately went down to check it herself and said there were a number of things they could do but did not elaborate. When I left yesterday I noticed there were still some floaters in the tube and said something to the nurse. His night LPN called at 5:50 a.m. Saturday morning morning (she gets off at 6, I think) to tell me they had sent a urine sample out for testing but results wouldn't be back until Tuesday so they wouldn't know until then which antibiotic to give him.

Yesterday was his birthday. I took Greg and a mutual friend of his and Jon's to Waterville to say Happy Birthday and spend some time with him. Barb came up and Greg passed her on his way home. Jon ate about a fourth of his sandwich, it was supposed to be steak? but sliced very thin and he didn't want the green peppers and onions that came on the side. It didn't look that great to me either. No to the soup, cake and only ate about 4-5 tator tots.

Physical therapy came in and worked on his legs so I'm glad to see therapy continue. Somehow we took Liberty West at their word about the status of the bed sores. True, they are much better but somehow a third one on his rear was never mentioned. He has spent so much time laying at the same angle that somehow it doesn't surprise me but still it would have been nice to be informed. The one on his leg is pretty much healed.

Am still worried about another urinary tract infection. The first results of yesterday's analysis shows he is positive for an infection but they still won't know until tomorrow at the earliest which kind of bacteria they are fighting. It's amazing how many different kinds of antibiotics they have which are tailored for the various bacteria...no genetic forms there! He was running a slight fever.

Today we're all going up to officially celebrate both Jon and his dad's birthdays...Bill's is today.

Have things to do for today so I'll sign off for now--may have another post tonight.

Something -things is/are missing?

When I walked in Jon's room yesterday the first thing I noticed was that the rails were off his bed...if the rails are missing so is the Camelbak that hangs on them. When I found it it had been taken apart. Strange, it was like being at home; no one knew who took it apart or why, some of them weren't even working the day before. Seems the rails became loose and fell off; Jon couldn't get the new mouthpiece on the water bag to work so I guess someone was investigating how it was put together(?) I got it back together and put the old mouthpiece back on so when the rail goes back up itt is ready to go.

After visiting a while, Jon said, "they took me off the oxygen today" and that's when I noticed they had also shaved his mustache. He had been off the oxygen for 4 hours and was still maintaining an oxygen level of 96. Had him do a couple of his breathing exercises which he really needs to keep up. He was really upset about the mustache bit--seems they were originally just going to "trim it up a bit." I told him I couldn't get over how much younger he looked without it. Don't think that cheered him up much though.

He was also disappointed with the news that it didn't seem like he would be going to Golden Living in Napoleon--they weren't sure they could "meet his needs." I'm having the social worker check out 3 places one of which is another place in Napoleon. He really wants to be in a new place by his birthday (July 9). It would be so much closer for everyone and for family get togethers in the summer. It would be handy for the 2 fellas working at Campbell Soups; they ought to start working 7 days a week pretty soon.

I'm leaving for Chicago and NEA Retired convention on Sunday so unless one of the gals goes up and wants to leave a post you probably won't hear anything until late next week.

Hope all is well with the rest of you.

At a loss for a title-sorry!

Carol and I visited Jon yesterday. Carol massaged his hands and I soaked them and trimmed his nails. Angelique had found a neat hose for his Camelbak water bag that bikers use to hold it in position. We thought it might work well with Jon in several different ways. It is thick enough he can grasp it more easily with his hands when in the splints or if it had enough stiffness to it he could have it pretty stable and close to him. He fussed and fumed a bit. Said he had just figured out how to manage it by himself--refrained from saying I knew he would given enough time. I reminded him that any new adjustment usually took some time to adapt to and by the time we left I think we had a workable arrangement. Thanks, Angelique, for your thoughtfulness!

I also cleaned and sterilized the water bag so its good to go for another week or two. Also fixed the fan. It had been knocked off the stand a few times and rattled like crazy. Finally took it apart and tightened everything up and got rid of most of the noise. It seems like the low speed is awfully fast and high makes it look and sound like it could take off for open spaces all by itself!

Jon was up in his chair for 30 minutes yesterday. They used a transfer board to get him in the chair. I also noticed a lift in the hallway but didn't ask if they had tried that first or just had it handy if the transfer board didn't work. He had gotten all the way to the fifth step in eating at the hospital and when he got back to Liberty he said he tried to eat but the meatloaf didn't taste anything like mine so he decided to forgo food for a while. His logic is driving me crazy! (Didn't know he liked mine all that well, either...) Also claimed he couldn't feed himself while in bed and I asked if they wouldn't feed him. He said some of them had said sure and others acted like "no way!" Doesn't matter I guess since he seems to have given up already.

He got a chance to talk with several of his friends. Carol's cell phone is easier for him to use than mine and whenever she comes he spends half his time on her phone. Such is life. Will visit tomorrow, Carol has to work so will probably go by myself. Take care.

Back at "Home," ....Again

Jon was sent back to Liberty West about 5 o'clock this afternoon. I had been feeling guilty about not getting up to see him on Friday and had been busy all day today but headed toward Toledo about 6. Someplace along the way it dawned on me that visiting hours were over at 8 but I decided to go ahead. (I had a Father's Day card for nephew Joe for him to sign--Joe will think that's neat! I got to the hospital and went to the desk to double-check on his room number and the nice person at the desk said they had no record of his being there so I headed back to Liberty (thank goodness it's just a matter of blocks) and called ahead to make sure he was there.

He looked really rugged; could hardly talk once I woke him up and was sleeping with his mouth open and his chest jerking with every breath. I immediately got the nurse who told me he was breathing like that when he came back. I assured her that it was not his normal breathing and usually signified something was wrong. I had already checked the urine and it was fine. She said she had just done his vitals and his oxygen was 99 but checked them again for me and his oxygen level was 88 so she upped the flow of oxygen. I assured her I wasn't leaving until his breathing improved and a half hour later told her it was the same. She checked his oxygen level and it was back up to 99. She listened to his lungs and stomach and declared them both ok. I called Barb and asked her if she remembered what Westerville did when he breathed like that and she said they either gave him an inhaler or a breathing treatment. The nurse said he did have orders for the inhaler so she gave that to him. A half hour later his breathing was much smoother, his head was not jerking back with each of the"kicks" in his ribs and the kicks themselves were considerably less strong so at 9:00 I headed for home.

Thanks for checking in. Hope you have a great Sunday.

Let's be Hopeful

Carol and I went to the patient care meeting and asked many questions. But many of them refered to a behavior management program which can only be administered through the psychiatrist and Jon refuses to see him--Jon still does not believe he has any problems--at least not ones that need work on! I get the feeling they still think Jon is getting enough fluids even though the color of the urine would indicate a lack thereof. They will try to give him a larger glass of water when they give him his medications. The chair did safely arrive and is stored. They emphasized he will have to get back in bed several times a day.

We went from there to St V’s to see Jon. He was being exercised by the occupational therapist and she put his arms through a range of motion workout. She did a little work on his feet and legs.

The cute nurse asked if he would like to try eating some food. He agreed to give it a try since he didn’t want to spend the rest of his life going around town with a food tube hanging on his chair... actually what he said was he’d like to someday be able to eat another Big Mac. She explained that starting food was a process of moving through the 5 stages of food types: clear liquid, full liquid, soft, medium(?) and anything he wants. That was also influential! He ate about a1/4 of the jello, some of the soup, 3/4 of the Ensure Enlive and a few spoonfuls of the cherry ice. If there are no problems he goes to the next stage. Of course he had the nurse feed him (there was no adaptive silverware so someone had to do it.)

His vital signs are much better today. The staff were more comfortable with his blood pressure readings which were up. That 51 figure referred to yesterday stands for the “mean arterial pressure” which needs to be 60 or above. When we arrived it was 64 and when we left several hours later it was 75. The blood pressure on our arrival was 117/43. His urine is much clearer but still reddish. He was more alert and didn’t fall asleep at all. As long as a person kept the conversation going Jon stayed in it. He had a fever today of 100.6 when we arrived but when we left it had fallen to 98.7. Still is a little high for him since normal is somewhere in the 97 range. The white blood cell counts have fallen considerably, from 50 to 20 and from 26,100 to 11,400.

He did not have a central line inserted because his blood pressure started to rise and stabilized last night shortly after we left. Yeah! His IVs have been changed to mispenem cilastatin and norespinephrenine bitartrate. Earlier today he was taken off levothid and put on tobramycin. Then later tonight they started him on primaxim--don’t know if that replaced any one, or all the others, or not. This infection is still a form of gram negative bacteria but is called proteus miribilis.

When we called for a 9 o’clock briefing we found that he had been transferred out of the ICU to the fourth floor, room 404, another step forward. Hope they keep him long enough to have this one thoroughly licked.

The nursing home in Napoleon has backed down somewhat and said there were other issues other than the bedsores and would check with the administrators again. I thought yesterday they said it was stabilizing his risk of infection but there might be something else involved.

Thanks for checking in, hope your summer is off to a good start. We’re still planning on celebrating Josh and Angelique’s birthdays, Father’s day for Bill, Joe, Marty and David on Sunday.

Oops? Not again!!!

How fast things can change! Thursday I was so pleased with how things were going. Saturday my Mother and and sister, Peg, came to visit Jon. He was sleeping when they got there and seemed sleepy after about an hour so they said their goodbyes.

Sunday, Barb and her dad and Greg and I went up to visit. I noticed his urine was getting dark again and even had a few “floaters” in it. He assured me he was getting enough fluids and that the staff thought so, too--between the liquids with meds, his drinks at mealtime and whatever drinks he either got from the Camelbak or he asked them for.

Monday, I had a meeting in Perrysburg, about 20 minutes away from the Liberty Nursing Center so I decided to make a quick run his way to see how things were going. Angelique and Jeff had stopped by on their way home from a trip to New York. I was mortified at the color and the amount of cloudiness (4 inches or so) in the tube. I just lifted the foley bag to show it to him and he snapped at me-- so I left. Before leaving the building I asked one of the staff to check on him after his company left and see how he was doing. I reminded her that the infection he had never really goes away it just needs to be under control and he had gone very quickly from being incoherent to just plain out of it!

I really expected to receive a call during the night so I didn’t sleep well Monday night. I did call though in the morning to see how he was and if they were keeping track of his output. While the gal was searching for that info I explained why I was concerned and when I got to the 4 condensed inches of cloudiness she gasped. She said that they could probably use extra fluid when they flushed the feeding tube to get more liquids in him and I agreed it would be a good idea. Ten minutes later she called and said that St. V’s had discontinued the cranberry capsules and she could start those up again and I thought that would be a good idea, too.

Today, actually yesterday but to be exact Wednesday, Carol and I stopped by for a quick visit. As I was parking in their lot I got a call from Liberty saying he had gone to the hospital for an appointment with his wound care doctor and then commented about how his stomach had gotten bigger. They took his blood pressure and it was low enough they agreed with him that he needed to go to the emergency room, again!

So, off we went to St.V’s. When we got there they had already taken 5 vials of blood, 2 samples of urine (very red), then he had x-rays of his stomach and chest followed by a CAT scan of his tummy. He had 2 IVs put in; one for 2 antibiotics (cipro and cefetime) and another for something to help with his blood pressure. At that time it was pretty obvious he was going to be admitted and probably to ICU.

An ICU doc explained that while he was admitted to the ICU he would not be under the care of that staff since he was not in quite the critical condition he was in 2 weeks ago. Instead he would be under the care of the infectious disease staff. A while later when we were allowed to see him the nurse sounded like he was indeed back under the critical care staff’s care since his blood pressure had not responded like they anticipated. His infection is systemic or septis meaning it is through all his body. He would need another central IV line like he had last time and probably in the neck again...something that Jon was very unhappy about. I imagine that any movement of the head irritates the area around it. Last week I had kidded him saying that the marks left on his neck made it look like a very thirsty vampire had attacked him!

Just before we left the results of the blood test had come back. His white blood count is 26000--two weeks ago when he was there it was 18000! The blood pressure numbers are 82/37. However, there is another number that goes with that that neither Carol nor I understood and that was 51. While we were there it dropped to 48 and what they were aiming for was to get it up above 60! That’s what brought on the central line--the medicine will be levophed.

That’s about it for now--time to hit the pillow. The chair has made its way to Toledo, the patient care meeting is still on for tomorrow at 1 and the place in Napoleon says they will take him once he gets into a stable condition. Neither Napoleon or Defiance hospitals have an intensive care unit so he would have to be taken to Toledo anyway if another problem developed.

Take care...

Jon Meets Liam

Jon was perhaps in the best spirits I've seen in ages. His face looks good, his voice is strong and he's been doing some exercise on his own. Since he has come back from the hospital he could have some therapy start up again and they put some weights on his wrists while doing some exercises. He has obviously been drinking quite a bit of water which is great--even if he slacks off a bit.

I exercised Jon's hands and he even asked to have his legs and feet exercised some also. Every little bit of directed movement helps to keep him flexible. I think I have forgotten to mention that Jon is still on oxygen and is supposed to be blowing on the "pickle" daily to strengthen his lungs. He also has a breathing meter but we only did the pickle today.

Joe (sister Carol's son) and Jenny came shortly after I arrived and brought Liam. Jon has never seen him yet, only looked at pictures on our cameras. We played airplane with him and Jon was able to give him a few smooches on the cheek. I tried sitting Liam on the bed close to Jon but couldn't get the baby in a comfortable position.

Supposedly getting the chair up to Toledo is back on the plan but I'll believe that when their van drives into my driveway!

Home-I guess that's what this is.

This was Jon's comment we overheard when he was talking with his dad on the phone. He has been moved back to Liberty West. He's feeling much better although I'm still convinced he's having some thought process difficulty. He's well aware of the seriousness of his latest UTI. There had already been some damage to the kidneys before this last infection and new damage showed on the CAT scan. However, I'm still not sure we've convinced him how much water is enough. Not sure the staff is helping either--they seem to be giving the impression he's getting plenty of water....

Have again asked for a patient conference, this time with the social worker who was on vacation when I asked the assistant director of nursing about setting one up. I'd like to see him on some combination of food and the feeding tube if we can't go back to food and ensure. One of the reasons he stopped eating breakfast was he'd gained some weight and figured that could be a solution.

Am going up today...will keep you posted.

Not quite there yet-but moved

I took the day off today and didn't go to Toledo but Jon called and said they had moved him from the ICU to room 430. Progress is being made if ever so slow! Was reading up on Urinary Tract infections (UTI's) and found that for people with spinal cord injuries the UTI's are among the most life threatening conditions....and the best advice, which he hates to hear, is to drink water; drink, drink and then drink some more is how the article put it!

Carol and I are going to see him tomorrow so we'll have a better up-date.